Data Registry Management

The Research Data and Information Coordinator administers and coordinates several large data registries and research studies. Services encompass all aspects of projects, from submitting the protocol to the Institutional Review Board (IRB) to securing subject consent and collecting and processing all necessary study data. Current projects underway include the following:

  1. Intermacs (Interagency Registry for Mechanically Assisted Circulatory Support): This project follows patients who receive FDA-approved ventricular assist devices (VADs). The intent of this national observational study is to raise the standard of care for heart failure patients by following their continued clinical treatment, quality of life measures, and neurocognitive testing results during their hospital stay and routine follow-up visits.
  2. TVT (Transcutaneous Valve Therapy) Registry: A new registry that follows patients who have undergone a transcutaneous valve therapy procedure for critical aortic stenosis as opposed to open-heart surgery. This registry is focused on outcomes for this new type of therapy.
  3. TRANSLATE-ACS study: This study follows patients who have experienced heart attacks and have been treated with angioplasty and/or stents and are also being treated with blood thinning medication, such as Plavix or Effient. This is also a national study and data collection is done in conjunction with IU Health Cardiovascular Outcomes through the National Cardiovascular Data Registry (NCDR) CATH-PCI registry. The main focus of the project is to raise the standard of care for heart patients as it seeks to track the use of blood thinning medications inside and outside the clinical setting.
  4. PACE-MI study: This observational study follows heart attack patients and is primarily focused on treatment with beta blockers. Information about cardiovascular history and details about the patient’s current hospital admission are recorded, but of particular interest is the current type and dosage of any beta blockers along with any change to beta blocker type and/or dosage over a 2-year follow-up period.

To discuss your data registry project, please contact Colin Terry (317.962.2045).